A whole new week

Anna has not yet had a whole week in the hospital without major surgeries or setbacks.  Maybe this is the week.  We set up a "schedule" for her today that involves radiation treatment, speech therapy, physical therapy, playdates, "field trips", and lots of rests in between.  Today went pretty well with all that.  Hopefully tomorrow goes well, too.  Tuesdays, as of late, aren't really good days for us.  As our nurse today told me, maybe we should just think of tomorrow as the first Wednesday :)

A few relatively exciting things happened in our hospital life today.  First, Anna had a playdate this afternoon with Kate and our neighbor; Anna was looking forward to finally being able to see Carly.  As part of the playdate, we packed Anna up in her wheelchair, and were able to take her OUTSIDE.  Although it was only for about 10-15 minutes, that is more outside time than this girl has had in 5 weeks.  Anna watched Kate and Carly run around in the warm weather and smiled.  These were the first smiles we've seen out of our daughter in weeks; it was good to see.

The other exciting thing was that, as of tomorrow, Anna will be off of her isolation status!  I asked about the continued isolation requirements this morning during rounds and, amazingly, by the end of the day we got the good news.  No more yellow gowns ... hooray!  Plus, this means Anna may have the opportunity to interact with, or at least see, other kids in the hospital, instead of being stuck in her room ALL THE TIME.

Every day Anna seems to be getting a little bit stronger and able to handle more and more.  It will be interesting for all of us to see how well she does with a whole week without any set-backs.

The current plan to go home involves many stages.  First, Anna has to be strong enough to ride in a carseat for 30 minutes, twice, with home activities in between.  Once she passes that test, we may get a day pass to come home on a Saturday.  Matt and I would also need to be able to do all of Anna's care, including medications, feeding, bathing and toileting needs, and transferring her from place to place.  We're doing more and more each day at the hospital so I think we'll be ready when Anna is.  If all goes well with a day pass, then the next weekend we may be allowed to have an overnight pass, from Saturday to Sunday.  We haven't thought much farther than that and we don't exactly expect that Anna will be ready by this weekend yet.

The radiation and chemo seem to be working so far, it will just be a matter of if they get every last cancer cell in Anna's little body.  Then, it's also a matter of helping her rehabilitate after a long month with many struggles and set-backs.

Besides spending time with Anna, we enjoyed seeing many people at the benefit yesterday who we haven't seen in weeks, months, or even years.  It was uplifting to be the recipients of such care and concern.  All of our interactions with people were very positive and encouraging.  However, one of my most memorable conversations happened with a little girl about Anna's age.

I was helping Kate make a bead necklace at the craft table when a young girl (whose face I recognized, but whose name I don't know) asked me for help tying the yarn for her necklace.

While I was helping her, she asked me, "Do you know the girl in the hospital?"

My response was "Yes, I do.  Actually, I'm her mom."

The girl put her hand on my arm and said, "This must be hard for you."

I don't remember what, if anything, I said back to her at that point; I think I was stunned.

Then she said, "When my sister was born, my mom was in the hospital and she almost died.  This must be hard for you."

After I tied her necklace, she wanted to put it around my neck, but it didn't fit over my head, so I told her I'd take it with me to the hospital.

The honesty and simplicity of that interaction was beautiful.  As much as we, as adults, want to do something to help someone who is in physical or emotional pain, maybe sometimes it's just best to acknowledge their struggle and then move on.

Don't get me wrong, we appreciate whole-heartedly all of the help that we've been getting.  And there will certainly be more opportunities to help our family in the weeks and months to come.  But I could tell that this little girl felt my sadness and, in doing so, seemed to take some of the burden off of my shoulders.

But then we moved on and kept making necklaces.  As my wise mother has told me, emotions are like waves.  No one is going to be sad forever.

Time for prayers

Thanksgiving
Please thank God that Anna had a "playdate" this afternoon and was able to get some fresh air for a little while.
Please give thanks that Anna's isolation status will be lifted tomorrow!
Please give thanks for the consistency of nurses and nursing assistants we've had since our return to the hematology/oncology side of the 4th floor (also known simply as P4); they are very talented and have already done a wonderful job anticipating our family's needs.
Please thank God that the radiation and chemotherapy are killing the cancer cells.
Please give thanks that Anna is tolerating the gradual decreases of her sedation meds and steroids well.
Please thank God for the strength and energy Matt and I had to get through our long day yesterday.
Please give thanks for the mommy-Kate dinner date that we had in the hospital cafeteria this evening; we both needed this time together.

Requests
Please pray for strength and wisdom for my mom as she has her first overnight and all day shift with Anna tonight and tomorrow.
Please ask God to bless my day tomorrow with Kate and Ethan; we'll be visiting Anna at the hospital in the afternoon, but I'm looking forward to spending some "normal" time with them tomorrow morning.
Please continue to pray that Anna's treatments are completely effective in destroying all of the cancer cells.
Please pray that Anna experiences few (or no) side effects from the treatments.
Please pray for Matt and I as we prepare to have Anna home for hours, and days, at a time.  She won't be quite the same Anna that we had before.
Please continue to pray for Anna's care givers at the hospital.

Today's Lutheran Hour Ministries devotion contained a good message for me to hear.  The last paragraph was as follows:

"So, as God's witnesses, we continue to share the Gospel with those God places on our daily path.  At the same time we remember it is the Spirit who works faith in the hearts of the people, not us.  We are simply blessed to be God's instruments."

Please pray for any who have read this blog and heard our witness.  Pray that God's Spirit works faith in their hearts.

Thank you.

We are truly and utterly amazed at the care and support that was shown to our family during today's benefit.  We will never be able to say thank you enough or repay anyone adequately for their efforts and generosity.  Our only hope is that when all of this passes, which we know it will, we will do our very best to pay it forward to someone else.  Not only with our actions, but in the event that more money than we will need was raised, we have already been thinking about places to which we could give the "extras".

So .. thank you.

As for Miss Anna, I think this was a nice, relaxing weekend for her.  In spite of not having any official therapy visits, I was able to get her up in her wheelchair four different times over the past two days.  Yesterday afternoon we even took a field trip back to the PICU, but none of "our" nurses were on duty at that particular time.

Anna's vital signs (blood pressure, heartrate, breathing, etc.) seem to be mellowing out.  The doctors' current theory is that with all of the crazy stuff that has been going on in her brain lately, her body maybe just needed a chance to readjust to its new normal.  Anna has certainly been more and more awake the past two days.  Her sedation medications and steroids are slowly being tapered off.  Apparently you can't cut these down too fast or someone may experience withdrawl.

We'll just have to wait and see what this week has in store for us.  We've been hoping for several weeks now to just be able for Anna to have a routine; she thrives on routines.  But, something always comes up.  Maybe this will be our week :)

My mom is in town this week to help out, giving Melissa a bit of a break.  Our current plan is for my mom to take a few 24 hour shifts here at the hospital; hopefully it all works out.

Time for prayers

Thanksgiving
Please give thanks for the apparent success of the benefit.  We have no idea what the goal was, but from our perspective, it seemed like a success.  And everyone we spoke with was having a really good time :)
Please thank God that Anna had a relatively restful weekend.
Please give thanks for all of the amazing people we have in our church and McFarland community; we had no idea how much everyone cared.
Please thank God that Anna was able to have a friend over for a visit this morning; yesterday she told me that she really wants to see kids.  (We've already got playdates lined up for this week.)

Requests
Please ask God to grant me restful sleep tonight; I'm really tired.
Please ask God to grant that same restul sleep to everyone involved in the benefit; I'm sure they could use it, too.
Please pray for physical, mental, and emotional strength for my mom this week; she's going to need it all.
Please pray that Anna continues to tolerate her radiation and chemotherapy well.
Please ask God to remove all of the cancer from our little girl's body and help her make a full recovery.
Please pray for strength and balance for Matt this week.
Please pray for Kate.  She's still struggling with how to deal with the current upheaval.
Please continue to pray for wisdom, strength, and compassion for Anna's caregivers here at the hospital.

Thank you for all of your continued support and prayers.

Missing Anna

Although we may occasionally have the opportunity to sleep at home, it doesn't necessarily mean we sleep well.  Sometimes we just can't turn our brains off.  I'm sure everyone goes through that.

Right now I miss Anna.  I miss seeing her run around the house with Kate and Ethan.  I miss hearing her boss Kate around while they play together.  I miss her laugh.  I miss seeing her take care of her brother and teach him things.  I miss how much fun she and Kate have when they play.  I miss picking her up from school.  I miss watching her learn how to ride a bike.  I miss hearing her sing.  I miss her kindness.  I miss her stomping her feet, yelling, and slamming her bedroom door.   I miss her help.  I miss listening to her make up jokes.  I miss watching her make pictures and cards for the people she cares about.  I miss doing "I read a page; you read a page" before bed.  I miss her arms around my neck and her legs around my waist when I carry her.  I just miss Anna.

Maybe all of those things I miss are still inside Anna's broken body.  Maybe one day when her body heals, I'll get to hear, see, smell, and feel all of those things that I miss.  But it doesn't change the fact that right now I miss Anna.

I just needed to get this off of my chest this morning.  Please don't ask me how I'm doing today.  If you do, I'll probably just tell you that I'm tired.

A (hopefully) quiet day

Weekends at the hospital are much quieter and calmer than weekdays.  Not only will Anna have a two day break from her radiation and chemo treatments, but she'll only have one therapy session during the next two days.  Previously, we were a bit frustrated by the "weekend break", but today I'm looking forward to it.  I hope to get Anna up in her wheelchair a few times and maybe even take a bit of a field trip with her out of her room.  We'll see.

Yesterday was a pretty good day for Miss Anna.  She "tolerated" her radiation and chemotherapy well.  I now realize that some people's bodies do not tolerate these treatments well at all, so it's a blessing that Anna's doing okay with them so far.

Matt spent the day with Anna and we think he'll continue to do that on Fridays, so that he also has the opportunity to interact with Anna's primary care givers.

I went home by 7 yesterday morning and spent the day with Kate and Ethan (and my mom until around noon).  Ethan is such a riot right now; I miss being able to spend time with him.  Kate is struggling in her own way, especially with Matt and me doing the back and forth hospital routine again.  We hope that her "in the moment" personality keeps making life enjoyable for her.

I brought Kate and Ethan to visit with Anna yesterday afternoon/evening.  Anna had just finished having a bath, complete with hair washing.  Her nurse yesterday worked for more than a half hour trying to get out all of the tangles of the last 5 weeks.  I think this was the first time Anna's hair had been thoroughly brushed through since we've been here.

We took the kids (minus resting Anna) to the floor kitchen last night for a family dinner.  I think this was the first time the four of us had dinner together since Monday night.  Some day we'll be able to all be home and eat together as a whole family again.

Anna's blood pressures have been all over the board again in the last 24 hours.  This could be a result of many things (changing ICPs, side effects of medication, etc.), but we're hoping it's nothing serious.

Last night Anna called out at one point and said "The tube in my nose came out."  Hmm ... somehow her ng tube was completely out.  I asked her if she vomited; she said no.  I asked her if she was picking at it; she said no.  These things don't just fall out.  Anna's night nurse took it as a good sign that Anna was irritated with it enough to (most likely) pick at it until it came out.  But it means that today she needs to have it replaced.

Tomorrow is "Songs for Anna".  Matt and I have been struggling with how to feel about it all.  So far in this journey we have been allowed to stay in our "family bubble" and haven't had too much interaction with the world outside of our immediate needs.  To be honest, we are incredibly grateful for the opportunity to do this our own way.  We are still amazed at how people are willing to drop everything and help us at a moment's notice.  But the benefit is different.  Many, many people (some of whom we have never met) are putting in a lot of time and energy to make this happen and it feels a little intimidating.  We're not the kind of people that like being in the spotlight.

Last week I got in touch with my cousin, who unfortunately was the recipient of a similar kind of benefit a few years back.  He had some wise words and perspectives to share with us.  Due in part to his advice, Matt, Kate, Ethan, and I plan on attending the benefit together while someone from church stays with Anna.  Matt and I, however, would like to be the "flies on the wall" instead of the center of attention, and just be allowed to be witnesses of the amazing support network we never knew we had.

Time for prayers

Thanksgiving
Please thank God that Thursday's false alarm was truly a false alarm.
Please thank God for the relative rest of a weekend at the hospital for Anna.
Please continue to give thanks for the wonderful care Anna is receiving here.
Please give thanks that Anna seems to be improving more each day.
Please thank God for all of the people who care for our family and who are willing to go to great lengths to help us.

Requests
Please ask God to grant Anna rest and healing this weekend.
Please pray that the changing blood pressures are nothing serious.
Please ask God to quickly and easily sort out Anna's ng tube business.
Please pray that Anna experiences few side effects to all of the drugs she is taking right now.
Please continue to pray for those involved in tomorrow's benefit; for strength, energy, and peace as the details fall into place.
Please continue to pray for Anna's caregivers here at the hospital.
Please continue to pray for strength and wisdom for Matt and me.

Before all of this happened, we had a routine of doing family devotions in the morning after breakfast and before school and work started. We would pray with and for the kids about the coming day. One prayer we often had was for God to watch over their minds, bodies, and souls throughout the day and to have his Light shine through them so others could see His love. We still have that prayer for our kids, but I wish it wouldn't be under these circumstances. Wasn't there an easier way for God to shine his Light?  Why did it all have to happen to Anna?


Thank you, as always, for all of your prayers and support.

False Alarm

Last night we had a (hopefully) false alarm.  I got home, had dinner with Melissa, Kate, and Ethan, and then put the younger kids to bed.  While I was in the midst of writing the last blog update, Matt facetimed me and said that Anna's breathing seemed to be getting more erratic.  He showed me what she looked like and I was also worried.  The doctors started talking about a trip back to the PICU.  I asked Matt what he needed from me; he told me he wanted me to be around for whatever might happen.  Having been in this kind of situation before, we realize that we do much better when we face the trials together, instead of without one another.

So I made a few calls to make sure Kate and Ethan would be safe and well taken care of, then got a ride to the hospital.  (I was not in a good place to make the drive myself at that point.)  We are continually amazed by how willing people are to drop everything and help us at a moment's notice.

Everything turned out fine, but Matt and I were understandably worried, especially after how fast things deteriorated for Anna last week.  In fact, the people who were around last Tuesday were also a bit worried, but those looking on the situation with fresh eyes were not nearly as concerned.  They reminded us that Anna is taking some pretty strong medications right now, and all of those also have side effects.

To give an idea of the potency of the chemotherapy drugs, we are supposed to be careful with any of Anna's clothing that might have been soiled with bodily fluids (sweat, urine, vomit, etc.).  We should wash those clothes separately from Kate and Ethan's clothing so that they don't have any unnecessary exposure to the chemo drugs.  And these are the drugs that are being injected into Anna's blood on a daily or weekly basis.  What are we doing to poor Anna's body? :(

One comment that Anna made yesterday that made me sad was "I feel like God has forgotten about me."  In addition to praying for Anna's physical health and healing, please also pray for her spirit and spiritual well-being.  We have been told that kids who go through this kind of experience are resilient and come out even stronger than they were before.  We hope that in addition to having few (or no) long-term physical side effects to the cancer and treatments, Anna does not experience any long-term negative spiritual side effects.  In fact, we are more concerned about that than her body right now.  We have no idea what kinds of thoughts have been running through her head during the past weeks.

Back to Reality

Spending extended time at the hospital with Anna brings me back to the reality of our situation.  Anna is still doing well, but today definitely had it's ups and downs.

Anna's radiation experience this morning went well again.  Since she is no longer on the PICU, she needs to go to a recovery room before going back to her regular room.  I met up with her down there and overheard the nurse talking about something slightly irregular with her heartbeat.  After our experiences the last few weeks, I asked lots of questions and made sure that everyone else caring for Anna was aware of this.  Anna had an EKG later in the day and everything came back normal.  Whew!

Anna was also nauseous again this morning when she woke up.  The poor kid is on so many medications, many of which have "nausea" as a side effect.  It's hard to separate out the layers with her these days.

When Anna was awake today she was much more verbal and physical than she had been last week, or even the week prior.  The nurses and therapists who saw her today (who hadn't seen her yesterday) were as impressed as we were in terms of how different she is since her radiation/chemo began.  As I said before, she still has a long road ahead of her, but it's always nice to get reassurances from people with more experience than us.

This morning Anna had a "swallow study" done, complete with barium laced food and x-rays.  We're glad the study took place, but are a little bummed about the results.  Anna is not allowed to drink straight liquids right now; in case you didn't know, those are the hardest to swallow.  While Anna was being fed the different kinds of foods (liquid, "nectar", honey, and crunchy), she did well except for the liquids.  One time when she drank through a straw, the water went down her trachea instead of her esophagus.  Not good.  Even worse was that she didn't cough and no one would have noticed the difference had we not had the x-rays.  No one knows if this is something permanent or if it will change as she gets stronger.  As with many other aspects of Anna's future, we'll just have to wait and see.

Anna was pretty wiped out after the swallow study.  Since she was sedated for the last week, she hadn't been upright in bed or in her wheelchair at all.  Today's field trip to the swallow study lab was the most stimulation and physical activity that she has had in awhile.  When we got back to the room, she crashed.

She had to wake up for a clothing change and her OT/PT therapy session, during which she went back to her wheelchair.  After a short time there, it seemed like she was really fatigued and having to work very hard to take breaths.  I panicked ... well, not quite.  I was worried.  I asked the therapists to put Anna back in bed and got her nurse and doctor to come in and have a look.  Everyone assured me that she is perfectly fine, but they were all glad that I asked them to come in with the slightest concern.

Anna ended up taking a two hour nap and then woke up for the neurology team to check her out, too.  They also say that she is fine.  However, we've decided that after our experiences the last several weeks, we're entitled to be overly cautious :)

We made a jump today with who has access to this blog.  We realize that we have not met many people who read what we write each day, or maybe we just haven't seen you in awhile.  Or we already know you pretty well and you know our family's beliefs and values.  I think knowing those things about our audience has made writing some of the things we've written a bit easier.  If I don't have to talk about my faith directly to a person's face, it's not as scary for me.  The anonymity of the internet has its advantages.

Well, now things are different.  Now I've given this blog's address to some of the wonderful people with whom we've worked at the hospital.  We figured that if they've seen us as raw as we have been the past few weeks, they deserve to know the whole story, too.  Besides, Anna has worked her way into everyone's heart and they want to know how she is doing, even if they are no longer working directly with her.

Time for prayers

Thanksgiving
Please give thanks for the x-ray swallow study today that showed us Anna should not yet have liquids.
Please thank God that we are not in Chicago right now.
Please give thanks for all that Melissa has been able to do with and for Kate and Ethan.
Please thank God for the miracles of modern medicine.

Requests
Please pray that all of these little symptoms Anna has shown today are nothing serious.
Please pray that Anna continues to impress people with her determination and abilities.
Please pray that the radiation and chemotherapy are 100% effective and have little or no long term side effects.
Please continue to pray for those involved in Anna's benefit this weekend.
Please pray for those at the hospital who work with Anna on a day-to-day basis, for their wisdom, insight, and strength.
Please pray for strength and wisdom for Matt and me; we continue to need it.

Almost every time I turn the radio on these days, the songs speak directly to me.  Here's one that has been on my mind a lot in the last few days.

"Help Me Find It" by Sidewalk Prophets

I don’t know where to go from here
It all used to seem so clear
I’m finding I can’t do this on my own

I don’t know where to go from here
As long as I know that You are near
I’m done fighting
I’m finally letting go

I will trust in You
You’ve never failed before
I will trust in You

[Chorus:]
If there’s a road I should walk
Help me find it
If I need to be still
Give me peace for the moment
Whatever Your will
Whatever Your will
Can you help me find it
Can you help me find it

I’m giving You fear and You give faith
I giving you doubt
You give me grace
For every step I’ve never been alone

Even when it hurts, You’ll have Your way
Even in the valley I will say
With every breath
You’ve never let me go

I will wait for You
You’ve never failed before
I will wait for You

Is this for real?

Unbelievable.  Miracle.  Amazing.  I can't think of many other words to describe my day here.

Between last week Tuesday and Anna's extubation yesterday, one of the hardest things about being here at the hospital was the look in people's eyes when they talked to us.  Nurses would get teary when they saw us back in the PICU.  I, personally, had a hard time dealing with the fact that the hospital workers were losing hope.

Today people have a much different look in their eyes when they see Anna and talk with me.  The therapists kept looking at one another in amazement because Anna could do things today that she couldn't do with them before her radiation and chemotherapy began.  Granted, Anna still has a long road ahead of her, but it's pretty reassuring to us that everyone else is excited, too.

We were moved off of the PICU this afternoon ... again.  We're now residing in our sixth hospital room, and it's a nice one :)  It actually has a separate sleeping room for parents.  And we're at the end of the hall, in a corner.  Knowing what we know now about the level of care in hospital units (the most critical cases are in the corner of the PICU right by the nurses station - we were there, twice), I feel comfortable that Anna is in a much safer place physically than she has been in awhile.  I'm still not quite sure how we managed to get this room, but I'll take it.

This afternoon Melissa brought Kate and Ethan by so that they could see an awake Anna.  For the first time in more than a month, Kate was able to give Anna a real hug, even though Anna was still lying in bed.  Anna was able to hug her back.  For a long time now, Kate has been saying "I just want to give Anna a hug."  Today she did.  Ethan followed suit and gave Anna his version of a hug, too, mainly just a pat on the head.

Anna has been pretty sleepy this afternoon and everyone is telling me that it is perfectly understandable and expected.  The best analogy I've heard relates to waking up after having your wisdom teeth out.  The kinds of sedation used are similar, however Anna has had much more for much longer and it's going to take awhile for the drugs to get completely out of her systerm.  Until then she'll feel pretty groggy.

She's still being watched very closely, but even though she's sleepy, the rest of her neurological checks are coming back very clear.  And ... she didn't need to have a "straight cath" all day!

It's so hard not to hope for the best.

Time for prayers

Thanksgiving
Please thank God for the miracle that Anna is still with us.
Please praise God that Anna does not yet need a catheter to urinate.
Please thank God for the exceptional care that Anna is receiving.
Please praise God for our new hospital room!
Please thank God that Avyn, the little girl whose family we have met here during our stay, went home today!  She's on a ventilator and will need in-home nursing care, but her family is HOME!
Please thank God for the strength and wisdom that Matt and I have had during this journey so far.

Requests
Please pray that Anna continues to improve every day.
Please pray that Anna has a successful "swallow study" tomorrow.  They want to do an x-ray movie of her while she swallows to make sure that everything is working as it's supposed to.  We hope and pray that Anna has not experienced any permanent nerve damage in this regard.
Please pray that Anna begins to sleep more "normally".
Please pray for Melissa, Kate, and Ethan.  They've spent a lot of time together lately, and are doing well, but could use some prayer support.
Please pray for strength for Matt this week.  Not only have we had some big highs and lows, but he's also working as much as he can this week, in addition to sleeping at the hospital a few nights.
Please continue to pray for all those involved in the benefit this weekend; we have no earthly idea how many people are actually involved in this.

In a different note, an article about Anna came out in our local paper today. The information in the article is pretty accurate.  However, our family comes across as a bit idyllic.  We've always said that we like our family and really like our kids.  But we're not perfect.  We screw up, a lot.  We yell when we shouldn't and do things that we regret.  We just usually don't publicize that kind of information or include it in a blog.

Thank you again for all of your support and prayers.